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The Long-Term Care System for Older Individuals: From the 1930’s to Today

Martha Holstein
June 27, 2016
We're pleased to share the opening presentation from our recent forum, Caregiving: The Politics, Ethics, and Realities of Long-Term Care, part of our Chicago Forum for Justice in Health Policy series. Martha Holstein is a former Health & Medicine Board Member and currently serves as a consultant for our Center for Long-Term Care Reform.

I’m so glad to see you all here today for the first of two seminars that will systematically explore care provision in the United States today from multiple perspectives. We start from a fundamental commitment to social justice—the belief that we all deserve equal respect and unless there are specific reasons for doing so (like needs-based distribution of housing vouchers) likes ought to be treated alike. The “non-system system” of care provision fails on both counts.

I would like to note that I am using the word care as it has been developed among feminist ethicists as a shared commitment of mutual respect, competency in care provision and honoring the moral obligations on which relationships of unequal power rest. Feminist ethicists see us not as completely separate, independent and autonomous individuals but as essentially vulnerable to one another and enmeshed in relationships of care.  More about these views in the second seminar but I wanted to mention it this morning since the use of the word care may represent a difference among aging and disability communities.

My own work for many years has been at the nexus of ethics and policy with a particular focus on gender and age.  So it is no surprise that I have been critical of the ways in which our long-term care system is built around the care provided by family members, mostly women, and low paid women. How and why this is so tells us a great deal about the perpetuation of inequalities that persist no matter how much change has occurred in gender or race relations. It also tells us a great deal about the persistence of privilege that allows those with power to be absolved from noticing and empathizing with people whose lives are distinctly non-privileged.  It was what allowed a legislator during the debate on Medicaid in 1965 to ask—unchallenged-- “who wouldn’t want their beds made and their meals prepared,” as if he ever did either.

So, in the course of this morning’s seminar and its follow up, our intent is to:
  • Call attention to the hidden injustices within the long-term care system that relies on mostly unpaid work by family members, particularly women, and the woefully inadequate and insufficient workforce of paid caregivers in underfunded state Medicaid programs.
  • Examine deficiencies in workforce development as demand for services expands.
  • Propose a system of care based on the primacy of relationships that would demonstrate equal respect for all involved.
  • Explore and identify the common challenges and potential solutions among aging and disability stakeholders while being sensitive to the differences that may mark the two groups.
  • Challenge assumptions about aging, disabilities and caregiving.
To set the stage, I’ll offer a brief sketch of how the current non-system system came about.  It did not happen by chance.  Partly it is the result of deliberate policy choices and partly the result of the persistent inequalities arising in a society framed by relations of power and privilege and by somewhat tepid challenges to the status quo. Work within the existing system has prevailed. Unexamined assumptions, unintended and unexplored consequences—and for the past 30 years the ideology of neoliberalism with its overwhelming favor of markets and individual effort over public and collective action and the parallel emergence of the new aging that has also stressed individually achieved successful aging—has undercut justifications for well-developed public responses to an array of problems and issues. Hence, there has been little room for repair.  That needs to be changed.  

In my brief historical overview, I’ll focus on policies and programs put in place to meet the long-term care needs of older individuals and then Tamar Heller will focus on issues related to disability.

How did we arrive at the now?
  • A seemingly modest section of the Social Security Act of 1935 saying that benefits could not go to anyone in a public institution (intended as a way to close down almshouses) indirectly, but not surprisingly contributed to the growth of private, for–profit facilities
  • Thirty years later, the passage of Medicare and Medicaid in 1965 furthered that trend. Medicare, so strongly opposed by the AMA, was directed at acute care and Medicaid, the means-tested part of that big year’s legislative effort would pay for institutional but not care at home, which was assumed to belong to families.
  • The1970s, and early 1980s saw a critically important but often neglected pivot point in the history of public policy and also attitudes toward late life which set the direction for much of what we see today:
    • Massive changes in political ideology as the new conservatism and its ideology of neoliberalism triumphed.  Our already modest welfare state was under attack.
      • In short, neoliberalism advocated small government and championed individual responsibility while at the same time blaming programs for the old as the cause of childhood poverty and marked the beginning of crusade against entitlements.
    • The seemingly unrelated but important effects of the strengthening women’s movement on women’s employment and family structures challenged the old assumptions but did not redirect policy.
      • Assumptions about women’s availability to provide care did not change
      • Genderized workplaces made women the logical choice to be care givers
      • Cultural norms also supported that choice
      • Women were offered “sainthood” but not help beyond support groups, respite (which while important did not lead to structural changes)
    • The development of the “new aging” with its stress on successful and productive aging, filled with good intentions, began to undercut the justifications for making older people the target of heath, income and social welfare programs; it unintentionally became an ally of the neoliberal agenda.
    • We saw the emergence of the aging network, the professionalization of service provision and the strengthening of aging advocacy organizations (which now had policies to protect), but it also meant the development of territorial protectionism
    • Inroads into primacy of institutional care
      • Channeling grants (cost saving the core value)
      • Nursing home scandals
      • Little attention paid to the possibilities of creating “good” congregate living as exists in Scandinavia
      • Emergence of “any willing provider” as home care agency
    • Elevation of autonomy and independence, in their most individualistic form, as central values in long-term are ironically reinforced both neoliberalism and the new aging as ties among individuals and groups became secondary to individual achievement and the fracturing of strong social bonds
  • Much of this continued during the 1990s and beyond:
    • Era of cost containment
      • DRGs and “quicker and sicker”
      • Growth in numbers of people who needed care at home and increasing hours of care provided by family member
    • Passage of the ADA in 1990 and the subsequent consent decrees
      • Deepened commitment to deinstitutionalization; “rebalancing” as the buzzword and goal with little attention to the unintended consequences
    • Neoliberalism continued and, joined by the new aging, served as justification for reduced spending
    • Elevation of successful aging (i.e. the hurdle-jumping great-grandmother) the continuation of mid-life norms into old age; the commitment to an ageless society and other elements of the new aging upheld as the goal for an aging society; contributed to shame for not measuring up and a flight from old age.
Which bring us to 2016 and the critical question “What now?” How can we pivot away from neoliberalism and the assumptions that have dominated long-term care provision for more than half a century to achieve a more just system of care? Our task today and at the subsequent seminar is to get as clear as we can about the realities of the current non-system systems and to also challenge the taken-for-granted assumptions and underlying moral values that marginalize both care providers and care recipients and lead to indefensible injustices. If we can’t imagine a very different future, we cannot find our way there.